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Date Posted: 05:45:54 01/12/13 Sat
Author: GoodWillTalking
Subject: 2nd Chemo Appointment completed

Message from Ravenbeauty:
Learned a lot from my visit with the Oncologist today before going to do my chemo this afternoon (Abraxane only today-next week both Avastin and Abraxane together again). My blood pressure was high today and I have to believe it's nerves. When I was on my way home from my first treatment last Thursday, I was literally high fiving myself in the car thinking this wasn't so bad after all. I was "Yippee Kai Yaying" that first day until reality set in later this week. This past week has been CRAZY! I started off just tired with some nerve and joint pain that first night. I figured that would be the worst of it as I had no vomiting, etc. I wish I had spent more time studying chemo than I did alternative medicine because I was just unprepared and hadn't really done my homework on what to expect. I got a little strange bleeding that I would rather not get into that had John and I a little freaked out, but that has thankfully died down. Got a strange rash that has finally died down.

Both the nurse who accessed my port today and my Oncologist explained that this is normal because the first day or two is no indication of what's coming from chemo. He said that it's usually around the 3rd day and so on that all the side effects you are personally going to get in your case, begin to come out of hiding. I had everything in reverse and was a little freaked out by it. I thought that this was the worst of it. The pain got really bad by Monday, which is why I tried to cancel this weeks treatment, but then I began getting incredibly dizzy and nauseous with intense stomach cramps that all seemed to wrap together. Kind of like an earthquake that slowly rolls out over a large area and takes a while to show all the damage. They insisted I come in and really wanted to do the bloodwork at least (we ended up doing the chemo as planned today). My white cells have dropped a few points, but still within range.

My blood pressure was unusually high today, but that's probably because after the way the week ended with all of this, I was like a nervous Chihuahua. I was so proud of my blood sugar, which was only 105 in late September, but it's now spiked to 168 and we know that it's the steroids to control the pain and the side effects of the chemo (I guess you have to choose your poison). I am upping my Cinnamon to help lower that number back down. Had chest pain yesterday and a few times over the past week, but it's hard to know if that's the chemo attacking the cancer, which is on the left, right over my heart, or my heart itself. We did let my doctor know what was going on (he is glad I am taking the baby aspirin every day as Avastin can cause heart issues).

We are watching that lesion, which has been growing steadily since my last surgery in late July to see if it's being affected by any of this, and we have all noted that it has not grown or gotten worse. It's more of a light pink instead of being red, but I am so afraid to get my hopes up. I am driving John crazy because every day I ask him if it seems lighter or different to him. Lord I hope I still have my wits about me at the end of all this!

There is a really sweet nurse from the infusion center who gave me a hug when she saw me back today. John was actually almost scared of how a like we were during my first visit because all we talked about was hair care products, how to tone down frizz, make up, and skin care! We just rattled on and on and on and John's eyes were like saucers! LOL! I think she may have gotten into trouble over it today because they had to pry her away (she was such a sweetheart). It's nice to have made a friend there.

I think you hit the nail on the head Ann. I do think it may help others by sharing what i am experiencing myself as I walk through this. I am feeling intensely tired and weak after each treatment and that's the only immediate thing I notice when getting into the car after we are done. I just wish I had known that the real effects take a few days to begin showing themselves. It's very accumulative.

Now on the Gleevec, he has already been in touch with Novartis and is trying to get a trial going! He said that he has done a few trials in his time on just one or two people with different medications, so it can be done. He said it is NOT impossible! I am writing Novartis a very heartfelt letter regarding all that has happened, and he is getting them my data with the positive C-Kit from my Angiosarcoma, and their drug! He knows that we could never afford it in a million years. Our one shot is a free trial and we are going to do everything we can to make it happen. The fact that my C-Kit was positive to their drug means that others with this rare cancer could be helped in the future. They owe it to themselves to at least try! We are not giving up on this one at all! That moment 13 years ago happened for a reason and now I know what the reason is! There is no going back!

P.S. I am not pregnant and have never been much of a soda drinker, but suddenly I am craving Dr. Pepper over the past few days! I have a feeling this has something to do with my blood sugar (like a craving because it's suddenly high). Bought a meter to test myself just to keep a handle on things. Will check it out this weekend.

Off to try and get some rest. I love you guys! XOXOXOXO! ♥

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Replies:

[> Re: 2nd Chemo Appointment completed -- wherly, 13:39:13 01/13/13 Sun [1]

I too do the driving others crazy by asking is it getting better etc. You are both in my prayers.


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[> Re: 2nd Chemo Appointment completed -- Mistyme, 01:52:07 01/16/13 Wed [1]

Praying everyday for you!!!


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